Sweat test

[sdavis227]

It's been awhile, but I originally posted some concerns after an ultrasound found our baby to have an echogenic bowel. Well, yesterday, March 12th, we had our baby, Parker. He was quite a bit smaller than expected and went into the NICU after an X-ray showed that something was still wrong with his tummy. He's been having problems eating, spitting up everything that he has gotten down, which has mostly been formula, and not seeming to want to breastfeed. He had a sweat test done today and they wanted to do a test on both of his arms, but one was taken by an IV, so he did both of them on one arm. He got plenty of sweat, but the tests came back 65 and 112, so they say that the test in invalid because the numbers are so far from each other. (Said they both are sodium, nothing about chloride?)
Has anyone experienced this? Also, any suggestions on the feeding? It seems that his tummy is just so upset that he doesn't want to eat.
Thank you in advance!
Shannon

 

[sdavis227]

It's been awhile, but I originally posted some concerns after an ultrasound found our baby to have an echogenic bowel. Well, yesterday, March 12th, we had our baby, Parker. He was quite a bit smaller than expected and went into the NICU after an X-ray showed that something was still wrong with his tummy. He's been having problems eating, spitting up everything that he has gotten down, which has mostly been formula, and not seeming to want to breastfeed. He had a sweat test done today and they wanted to do a test on both of his arms, but one was taken by an IV, so he did both of them on one arm. He got plenty of sweat, but the tests came back 65 and 112, so they say that the test in invalid because the numbers are so far from each other. (Said they both are sodium, nothing about chloride?)
Has anyone experienced this? Also, any suggestions on the feeding? It seems that his tummy is just so upset that he doesn't want to eat.
Thank you in advance!
Shannon

 

[sdavis227]

It's been awhile, but I originally posted some concerns after an ultrasound found our baby to have an echogenic bowel. Well, yesterday, March 12th, we had our baby, Parker. He was quite a bit smaller than expected and went into the NICU after an X-ray showed that something was still wrong with his tummy. He's been having problems eating, spitting up everything that he has gotten down, which has mostly been formula, and not seeming to want to breastfeed. He had a sweat test done today and they wanted to do a test on both of his arms, but one was taken by an IV, so he did both of them on one arm. He got plenty of sweat, but the tests came back 65 and 112, so they say that the test in invalid because the numbers are so far from each other. (Said they both are sodium, nothing about chloride?)
Has anyone experienced this? Also, any suggestions on the feeding? It seems that his tummy is just so upset that he doesn't want to eat.
Thank you in advance!
Shannon

 

[Nicole]

Have they mentioned meconium ileus to you? Our son, born with MI, showed an echogenic bowel on ultrasound and after birth was taken for numerous x-rays which showed a blockage. They let him eat for about a day but then he started spitting everything up. They then decided that they were going to try enemas to see if that would clean him out but it did not work for him and he ended up having surgery at 5 days old. I don't know much about the sweat test numbers as Danny never had one done. We went straight for the genetic blood test. But with those numbers and your sons symptoms I would strongly encourage you to do some more follow up testing. I wish you the best, I know its hard.

 

[Nicole]

Have they mentioned meconium ileus to you? Our son, born with MI, showed an echogenic bowel on ultrasound and after birth was taken for numerous x-rays which showed a blockage. They let him eat for about a day but then he started spitting everything up. They then decided that they were going to try enemas to see if that would clean him out but it did not work for him and he ended up having surgery at 5 days old. I don't know much about the sweat test numbers as Danny never had one done. We went straight for the genetic blood test. But with those numbers and your sons symptoms I would strongly encourage you to do some more follow up testing. I wish you the best, I know its hard.

 

[Nicole]

Have they mentioned meconium ileus to you? Our son, born with MI, showed an echogenic bowel on ultrasound and after birth was taken for numerous x-rays which showed a blockage. They let him eat for about a day but then he started spitting everything up. They then decided that they were going to try enemas to see if that would clean him out but it did not work for him and he ended up having surgery at 5 days old. I don't know much about the sweat test numbers as Danny never had one done. We went straight for the genetic blood test. But with those numbers and your sons symptoms I would strongly encourage you to do some more follow up testing. I wish you the best, I know its hard.

 

[sdavis227]

Thank you for your response, Nicole. While pregnant, we were most concerned that it was MI, but he already pooped twice within the last 24 hours, and each x-ray is looking better and better. They are saying that they think it is just gas in his tummy? They say that the newborn screen will look for genetics, but that even if that came back positive, they would still want another sweat test. As it is now, he will have another one done on Thursday. Hubby and I are both carriers, DF508 is mine and DI507 is hubby's.

 

[sdavis227]

Thank you for your response, Nicole. While pregnant, we were most concerned that it was MI, but he already pooped twice within the last 24 hours, and each x-ray is looking better and better. They are saying that they think it is just gas in his tummy? They say that the newborn screen will look for genetics, but that even if that came back positive, they would still want another sweat test. As it is now, he will have another one done on Thursday. Hubby and I are both carriers, DF508 is mine and DI507 is hubby's.

 

[sdavis227]

Thank you for your response, Nicole. While pregnant, we were most concerned that it was MI, but he already pooped twice within the last 24 hours, and each x-ray is looking better and better. They are saying that they think it is just gas in his tummy? They say that the newborn screen will look for genetics, but that even if that came back positive, they would still want another sweat test. As it is now, he will have another one done on Thursday. Hubby and I are both carriers, DF508 is mine and DI507 is hubby's.

 

[Nicole]

Have they tried giving him pancreatic enzymes? Could be that he is malabsorbing and thats causing the tummy troubles. Do they have him on any meds for reflux? Could be that too.

 

[Nicole]

Have they tried giving him pancreatic enzymes? Could be that he is malabsorbing and thats causing the tummy troubles. Do they have him on any meds for reflux? Could be that too.

 

[Nicole]

Have they tried giving him pancreatic enzymes? Could be that he is malabsorbing and thats causing the tummy troubles. Do they have him on any meds for reflux? Could be that too.

 

[Mommafirst]

Congratulations Shannon!!! <br>
<br>
I don't have a lot to offer about his tummy problems beyond giving him enzymes. I would also wonder if maybe he has a partial bowel obstruction, so he's able to get some out but still has a plug of sorts?? I don't know if this is possible, but maybe an x-ray or ultrasound would reveal something. My daughter had an MI at birth and couldn't keep ANYTHING down.<br>
<br>
Big hugs to your new addition, I hope you get answers quickly!!! Either way, he will be the light of your life!!!!

 

[Mommafirst]

Congratulations Shannon!!! <br>
<br>
I don't have a lot to offer about his tummy problems beyond giving him enzymes. I would also wonder if maybe he has a partial bowel obstruction, so he's able to get some out but still has a plug of sorts?? I don't know if this is possible, but maybe an x-ray or ultrasound would reveal something. My daughter had an MI at birth and couldn't keep ANYTHING down.<br>
<br>
Big hugs to your new addition, I hope you get answers quickly!!! Either way, he will be the light of your life!!!!

 

[Mommafirst]

Congratulations Shannon!!! <br>
<br>
I don't have a lot to offer about his tummy problems beyond giving him enzymes. I would also wonder if maybe he has a partial bowel obstruction, so he's able to get some out but still has a plug of sorts?? I don't know if this is possible, but maybe an x-ray or ultrasound would reveal something. My daughter had an MI at birth and couldn't keep ANYTHING down.<br>
<br>
Big hugs to your new addition, I hope you get answers quickly!!! Either way, he will be the light of your life!!!!

 

[sdavis227]

They've said that he isn't eating enough to be taking enzymes and I've been trying to push the reflux thing, but they say it is too soon to tell. It seems that he's fine on his tummy, or in an upright position, but that he spits up (and they also say it is still amniotic fluid that he is spitting up. . . he was C-sectioned) in any other position. He has slowed down on the spitting up, but he also hasn't eaten anything since 2am this morning (8:45p now).

 

[sdavis227]

They've said that he isn't eating enough to be taking enzymes and I've been trying to push the reflux thing, but they say it is too soon to tell. It seems that he's fine on his tummy, or in an upright position, but that he spits up (and they also say it is still amniotic fluid that he is spitting up. . . he was C-sectioned) in any other position. He has slowed down on the spitting up, but he also hasn't eaten anything since 2am this morning (8:45p now).

 

[sdavis227]

They've said that he isn't eating enough to be taking enzymes and I've been trying to push the reflux thing, but they say it is too soon to tell. It seems that he's fine on his tummy, or in an upright position, but that he spits up (and they also say it is still amniotic fluid that he is spitting up. . . he was C-sectioned) in any other position. He has slowed down on the spitting up, but he also hasn't eaten anything since 2am this morning (8:45p now).

 

[Alyssa]

You know, those sweat test results are far apart, but they are both positive ! Plus you both are carriers.... seems like someone better get on the stick and figure out for sure if he has CF or not.

Will they be doing the sweat test again? You should be demanding they do genetic testing. If they know you and your husband's genes it should be a pretty cheap test -- you may not need the full testing. You can double check with the Ambry guy on this website - he could tell you for sure.

Get pushy if need be -- find out where the closest CFF center is and start talking to them -- they will recognize the need to figure this out right away if you tell them what you have posted here.

Best wishes and please keep us posted.

 

[Alyssa]

You know, those sweat test results are far apart, but they are both positive ! Plus you both are carriers.... seems like someone better get on the stick and figure out for sure if he has CF or not.

Will they be doing the sweat test again? You should be demanding they do genetic testing. If they know you and your husband's genes it should be a pretty cheap test -- you may not need the full testing. You can double check with the Ambry guy on this website - he could tell you for sure.

Get pushy if need be -- find out where the closest CFF center is and start talking to them -- they will recognize the need to figure this out right away if you tell them what you have posted here.

Best wishes and please keep us posted.